How people with myeloma perceive patient-reported outcome measures (PROMs)

A Myeloma UK study indicates that patients feel PROMs are important for improving patient care but are currently underused in current clinical practice.

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Research news // 17th April 2019

Findings from a Myeloma UK study exploring patient perceptions of PROMs (Patient Reported Outcome Measures) have been published in Cancer Nursing Practice.

PROMs are questionnaire-based tools used to capture patient perspective about the impact of their treatment and/or illness on daily life.

This study was part of a bigger project to assess the role of PROMs in myeloma research and clinical practice. It included literature reviews and interviews with healthcare professionals, as well as focus groups with myeloma patients. This project found that PROMs are not systematically being used in myeloma research and clinical practice and that commonly used generic PROMs do not fully capture the impact of myeloma on patients and their families.

In this study, twelve myeloma patients were asked to review and compare four different PROMs. The PROMs were selected based on their frequency of reference within published journals and in interviews with haematologists, research nurses, and health psychologists. They each measure different domains (factors which contribute to quality of life) and are currently used in different settings.

The PROMs the myeloma patients reviewed and compared were:

EQ-5D-5L (European Quality of Life tool)

Used to measure health-related quality of life in a wide range of health conditions and treatments

Used as part of economic evaluation discussions

FACT-G (The Functional Assessment of Cancer Therapy)

Used to understand health related quality of life in cancer

Helps evaluate cancer patient needs

HADS (The Hospital Anxiety and Depression Score)

Used to measure mood (specifically anxiety and depression) in patients who are ill

Helps to evaluate the emotional and psychological needs of patients

MyPOS (The Myeloma Palliative Care Outcome Scale)

Used to measure the health-related quality of life of myeloma patients

The findings of the study suggest that not all PROMs were accessible or understandable, and that some PROMs were better than others at reflecting the impact of myeloma symptoms. Patients preferred PROMs that were sensitive to their illness experience, were easy to understand, and were easy to complete. MyPOS and FACT-G were the preferred PROMs.

Findings additionally suggest that patients thought that capturing PROM data is important for improving patient care and felt that PROMs are underused in current clinical practice. Patients in the study felt that PROMs validated their myeloma-related concerns and worries and aided difficult discussions with healthcare professionals. This suggests that using PROMs in clinical practice would not only help healthcare professionals gather data about side effects and symptoms but could also directly impact individual patient care.

Health Services Research Manager Jayne Galinsky, one of the authors of the study, said

“Our findings suggest that the principle of collecting and using PROM data is highly valued, but in practice, scoring, interpreting, and recording such data is complex. We would like to see investment in infrastructure and technology to support the routine collection of PROM data to improve our understanding of patient experience and allow researchers access to PROM data collected as part of everyday practice.”

Together with the the rest of the project the findings of this study highlight the need to increase the use of PROMs in myeloma clinical practice and to raise awareness of PROMs developed specifically for myeloma patients when evaluating the quality of life of myeloma patients.

“If we are to take patient perspectives seriously, and use patient data to address patient need, then we have to invest in people and in the technologies necessary to enable patient data to be collected and used to inform change”

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